In Dementia Veritas?

[CarerBear]

I'm sorry this is so harsh, but I am really at on my very last ass-nerve. And I'm starting to wonder if people's TRUE personalities actually come out when they experience dementia. Hence, the topic title.

I've spent months, years, catering for my loved ones, meeting every need, making every meal... and getting pretty much nothing but abuse, complaints, sighs, lies, racism, exaggeration and manipulation in return.

Again, I know this sounds terrible, but I can't help but suspect that this disease pretty much lays bare what they were before they suffered it. Before dementia stripped them of a fake face.

Any thoughts appreciated in advance.

 

[Rosnpton]

Hi,
My cousins said one of the Drs.dealing with their mum early on said that a persons dominant side/personality takes over with dementia.
Auntie was a bit 'happy hippy' when younger. When she moved into her ch,she just wanted to hug everyone,Hold hands,sit right next to them.
My mum-her sister- had a manipulative personality.she always played one member of the family against another/ exaggerated stories to her own preference/ had vicious temper outbursts.
Unfortunatly ,her dementia has exaggerated these traits. She will rant / make accusations/ be verbally and physically aggresive.
She may well have done this with her dementia what ever, but it seems odd that auntie is once again,being overly loving to all and sundry,and mum is horrid to them
Ros

 

[CarerBear]

Thanks so much for your response. Initially, I felt guilty when making this post, but I'm done with guilt. I forgot to add one trait - selfishness. Selfishness with a capital 'S" and a capital every other freaking letter.

Today is my husband's birthday. He has had a very rough time over the past couple of years, and could have used a bit of a break. Not a ton of presents or a special celebration, but just a bit of a goddamned break. A few moments to himself.

But, no... Not only did his Mum "forget" his birthday. She forgot that he's in horrible, cripping pain, and just wanted to put his legs up. Noooooo.... she wants fruit salad, and then not the fruit salad we made, and a sandwich, but not that kind of sandwich. Etc...

Her sheets are too hot, and too cold, and too sheety. She yells at the phone when it rings, but then complains that no one calls her. And the sighs. The constant sighs. Ugh...

I'm so sick of it. She is absolutely keen of intellect when there are things she wants or needs to remember. She can recite everything that happened on her own favourite birthday reminiscenses in 19-forty-freaking-seven. Or last year. But screw everyone else. Screw their needs. Screw their feelings. Screw them.

Pout, sigh, repeat.

 

[Rosnpton]

Hi
Sometimes just posting on here and letting it all out really helps-a bit like a safety valve.
You can safely say stuff to strangers you would not necessarily say to loved ones.
Dementia is a horrid illness,but,I do believe in mums case at least, that some of her actions are deliberate.
My brother and I can tell when 'mum' is speaking rather than the illness,by her facial expressions.body language etc. Quite often she will make accusations or do something really dangerous and then sit back to see what we do/how we react.
One of the nicer carers who has worked with her on and off since April last year when she went into the ch,said that the way she speaks with family-and me in particular- is one of the few areas she has a certain amount of control over.
She chooses what she wants to eat-but from a limited selection on the menu.
She can choose what she wants to wear,but only from the selection of clothes she has there.
She has a limited choice where she sits,which lounge etc.
What she can control is what she says (not all the time,but certainly some of the time) to her visitors,and then sit back and watch.
If she has been brewing worries etc for a week between visits (we go Saturday's) then when she sees us,what she wants to say all comes out in a rush,often with quite rude words involved, and said fast and loud as if she jsut has to get it out of her.
A bit like 'light the touch paper and retire a safe distance'. We are now having to learn not to react like the proverbial firework and blow up.
If she gets a big response -upset,emotional etc - she may remember it. She then gets a lot of attention for bad behaviours,which the ch are trying to discourage.
Therefore we have to try and ignore/ defuse/ distract.if all else fails-leave.
I do hope that you find a way that works for you,so you can concentrate on your hubie and family,and maybe visualise putting mil in a box and closing the lid for a few minutes peace and quiet. (I'm not suggesting locking her up or burying her,just a visual removing her from the front of your thoughts)
Best wishes
Ros

Thanks so much for your response. Initially, I felt guilty when making this post, but I'm done with guilt. I forgot to add one trait - selfishness. Selfishness with a capital 'S" and a capital every other freaking letter.

Today is my husband's birthday. He has had a very rough time over the past couple of years, and could have used a bit of a break. Not a ton of presents or a special celebration, but just a bit of a goddamned break. A few moments to himself.

But, no... Not only did his Mum "forget" his birthday. She forgot that he's in horrible, cripping pain, and just wanted to put his legs up. Noooooo.... she wants fruit salad, and then not the fruit salad we made, and a sandwich, but not that kind of sandwich. Etc...

Her sheets are too hot, and too cold, and too sheety. She yells at the phone when it rings, but then complains that no one calls her. And the sighs. The constant sighs. Ugh...

I'm so sick of it. She is absolutely keen of intellect when there are things she wants or needs to remember. She can recite everything that happened on her own favourite birthday reminiscenses in 19-forty-freaking-seven. Or last year. But screw everyone else. Screw their needs. Screw their feelings. Screw them.

Pout, sigh, repeat.

 

[Lancashirelady]

I completely agree about the selfishness. There are lots of traits in dementia but selfishness seems to be universal. The PWD seems incapable of thinking beyond themselves, no matter how caring and generous a person they used to be. We used to have a standing joke that my Mum hunted for people to give presents to but the other day she wouldn't even give a tissue to another resident in the home who needed one!
And she's good at playing frail old lady who doesn't understand anything when I'm visiting but can be on good form when her brother in law, who doesn't take any nonsense, is there.

 

[Jo Sutton]

There is something in what you say, Carerbear, but I think there are also aspects of the disease that are pure dementia talking.

My mother always had huge emotional intelligence - perhaps too much sometimes - and could always tell what you were feeling from the smallest of clues. I could never get anything past her. She was also painstaking about remembering people's birthdays and anniversaries. But now that the dementia has taken hold, she has no idea (or interest) in how other people are feeling and, if she finds out she has forgotten a birthday, isn't remotely worried about it. These two things alone are very unlike her, and I have learned to forgive them, because I know it's the disease that's doing it to her.

But you are right in that her personality is amplified through the disease. I'm lucky that most of Mum's personality is lovely, which makes her much easier to cope with, and I can see that, the other way, would make things much more difficult. I have so much admiration for the people here who are caring for a PWD with whom they have had a difficult or mixed relationship, especially as it gets louder as things progress.

I'm so glad you have found this place to vent. We all need to let off steam on a regular basis, and this is the best place I have found to do so.

Hugs

Jo xx

 

[Linbrusco]

My Mum 76 has Alz and is now in care. Mum always had a happy go lucky, generous, always smiling and placid personality and a lovely lady you could meet. Even when she went into care the only one that she ever got really stroppy with was my dad, ( but woe betide you if she thought you were talking about her)
When she went into care the Carers loved Mum (still do) So easy going and easily distracted and compliant.
2 UTI's in 3 mnths have put paid to that. Non compliant, selfish, moaning, angry at times, hallucinating, and stroppy with anyone she chooses.. Ocassionally she will put on hostess mode. She has been better lately and they have just started her on a low dose Lorazepam in the morning.
All these traits we have never seen pre dementia and I have always been the closest to her. Were they always there?
Dad 80 and with MCI ( no formal dementia diagnosis) has his usual difficult/selfish personality doubled.

 

[CarerBear]

Thanks so much for all your responses. And for letting me rant. I know I sound horrible, even to myself, but I've just had it tonight. Then again, I know tomorrow I will get up, do the same things I do every morning, and hopefully have a lot more patience and kindness than I feel right now.

 

[Lawson58]

O

You don't sound horrible at all. You sound like a human being who is worn out, frustrated and angry and none of us here is going to judge you for feeling like that. Most of us have felt exactly as you do now at some time or other and I think most of us would feel that you are suffering carer burnout.

I hope that you are getting some help, practical stuff for your MIL but more importantly for you.

A week or two of respite won't solve your problems but it might help you feel a bit better for a while. A visit to a sympathetic and understanding GP might be in order to help you through such a rough time.

And I am glad that the guilt monster isn't riding your shoulder because you are doing your absolute best. It might not always feel like that but we all know how challenging it can be to be a carer.

 

[Gracie29]

Dear CarerBear, you have stated exactly what my sisters and I have been feeling. I'm from the US but read these posts daily. This one I finally had to register an account and speak on myself. My dad had some very good traits growing up but in many other ways gave non-family the nice person, not the controlling person we lived with. I'm almost I my 50's and still with much counseling, dealing with the emotional abuse.
I had hoped with his vascular dementia we would have a different dad but no, the ability to fake caring for us is gone. He only lights up for a pretty nurse or aide in the memory care center. What little we had of my dad is gone with the dementia. Now everyone just feels sorry for him. They think he's so sweet. We are doing our best to honor him and make sure he has the best of care but mostly I do this for my Mom. She loves him dearly even though I think she's a victim herself. I can truly say, only my faith gets us through all this.


Sent from my iPad using Talking Point

 

[Rosettastone57]

Hi,
My cousins said one of the Drs.dealing with their mum early on said that a persons dominant side/personality takes over with dementia.
Auntie was a bit 'happy hippy' when younger. When she moved into her ch,she just wanted to hug everyone,Hold hands,sit right next to them.
My mum-her sister- had a manipulative personality.she always played one member of the family against another/ exaggerated stories to her own preference/ had vicious temper outbursts.
Unfortunatly ,her dementia has exaggerated these traits. She will rant / make accusations/ be verbally and physically aggresive.
She may well have done this with her dementia what ever, but it seems odd that auntie is once again,being overly loving to all and sundry,and mum is horrid to them
Ros

Hi
Sadly as others have said dementia brings out the worst. My MIL has been passive aggressive virtually all her life and always showed self centred behaviour and been spiteful and manipulative. For that reason it took family a long time to realise that dementia had taken hold. Of course nothing has changed except it's even worse with the memory problem and now increased agitation. We just have strategies to deal with it

 

[mab]

Totally agree.
OH has become so very self absorbed. If it's not about him, it's unnecessary.
The real personality comes right out in dementia.

Stop right here!! or a rant/rage is coming!!

 

[CarerBear]

Thanks again, all, for your responses. I don't know how to respond from this point onward. I'd like to find a balance been callous and overly caring.

Despite the fact that my posts suggest otherwise (and I certainly couldn't fault anyone for reading them that way, since I'm new here), I have been - to the absolute best of my ability- patient, kind, loving and attentive. But I'm worn out. And I can't help but notice that the more I try to appease, the more insensitive, angry, accusatory and hostile my MIL becomes.

Today, I did my best to let this brush off me, to leave the room when things were becoming unreasonable (assuring her safety, her having been fed, attended to, etc...).

I don't want to turn into a nasty person who's sick to the eye teeth of hearing for the thousandth time about how she couldn't have an ice cream cone once in May of 1943.

But I also don't want to accept that it's okay for her to constantly - and only! - care about her own needs and wants, and constantly shifting bizarre whims and accusations. Though I don't have kids, I don't think I'd accept this level of selfish behaviour from a toddler.

So, I'm trying to indicate (gently) that other people are suffering, including her own loved ones and my own. That I have parents I need to see and take care of, too.

But so far, anything that isn't about her has fallen on deaf ears. Either deliberately or unwittingly so. There is zero compassion for anyone else. I know that a large part of that is the disease... but honestly, sometimes it's so sad and frustrating.

Thanks again for listening.

 

[Spamar]

Hi Carerbear, why not just let rip, once? OH was generally quite easy to look after but there were occasions.......
One day I just couldn't take it any more and told him exactly what I thought. He was angelic for the rest of the day! I remember someone else online had done the same thing with the same result. I'm not saying it would work for everyone, and it obviously couldn't be used very often, but it might be worth a try.

 

[Rosnpton]

Hi
You are not a bad person
You are worn out kna....ed and fed up
No one-unless they have a vocation and choose it as a career- sets out to be a carer
It is something we get left with
Some on here are angels reading their posts, and seem to deal with such a lot with good humour,sensitivity and love
Others,myself included, feel ****ed off with what life has chucked our way
My mum is now in ch,but I helped look after her for about 2 yrs before ch,with her needs becoming g greater as time passed
She is double incontinent,aggressive, would go out wondering.
The care package should have worked-on paper ss explained in great length that it would work. It obviously didn't.
You are going to get burn out and become ill
If all your energy goes on pwd,there is nothing left for any sort of normal life

Please rant on here
We all do it-some more than others!! Sorry,that's me I'm referring to
Try and get some 'me time' even if it is unplugging g the phone and watching a dad with a glass of wine
Thinking of you and sending hug
Ros

 

[Oh Knickers]

Hi Carebear,

I would echo Spamar's comments. Bizarrely, mother, having been a destructive, manipulating, abusive and controlling mother (yup, she was a real sweetie) has turned into a pleasant old woman. (I shall just faint at this point)

However.

When she whinges, yet AGAIN, about how my uncle (by making her change schools to get her away from the poisonous atmosphere between her parents) prevented her from learning Greek. Really!. I just remind her she has had over 70 years in which to alter that situation. It results in a glare, but hey, it stops the 'I am the victim'. There are others, more horrendous than that, which I intend to stop in their tracks.

It might be worth plain speaking and then leaving. give yourself a break for a while. If she bad mouths you to others, more fool the listeners. If they are so offended at your alleged behaviour they can step in themselves and look after her.

It sounds that you have done a good job of looking after someone who is malicious and ungrateful. Part of it is the dementia as well. Nevertheless, you can set boundaries in. Part of that boundary is taking care of yourself and being with people who are worth your while. A crisis will come. But you do not have to put yourself through hell in the meantime.

Take care of yourself.

 

[Lawson58]

I don't think for a moment that my OH is anywhere near as difficult as your MIL for which I am very thankful.

However, I have my limits and boundaries about what I will take and will not and I can be very firm in my responses to him.

Your MIL sounds incredibly manipulative and selfish and that seems to be pretty standard behaviour for a PWD. The thing is that you can be patient and kind but you don't have to accept bullying and abuse.

I have become pretty good at reading signs of trouble brewing and now I intervene sooner rather than later, before I feel ready to explode. OH is still capable of getting my message but I admit that I feel more like a parent of a ten year old than a wife.

As a carer, it can be all too easy to lose sight of your own needs in all the petty demands and wants of the person you care for and that's when carer burnout can take over.

 

[Pear trees]

I agree that dementia can bring out a person's true nature. My mum has always been selfish, self centred, difficult, distant and verbally abusive. She drove most of her family (including me) away with her nastiness long before dementia was diagnosed. Her constant accusations of stealing her money and food, telephone calls and having the door slammed on family and carers then moaning because no-one cared or visited to her did not help. I arrange care etc for her out of duty as no other family member will.

 

[Witzend]

I do agree that dementia can bring out the worst. My FiL had always been extremely stubborn, and only became more so. In fact we put some of the first signs of dementia down to his innate stubbornness just getting worse. He would e.g. repeatedly put out in the garden, in winter, a large and tender houseplant he had been asked by neighbours to look after during a long holiday.

It took many years to dawn on me, but my mother had always derived some sort of perverse enjoyment out of seeing herself as a victim of others' greed, jealousy or nastiness.
So it wasn't altogether surprising when she started insisting that my husband or daughters were selfishly preventing me from visiting her, or that a sibling had moved to a distant part of the UK purely so that she wouldn't have to see her!

All of which were so untrue and ridiculous, they would really upset me.
I did just once tell her that if she didn't stop saying such horrible things NOW, I was going home this minute, and I meant it, and she must have known I did, because she did stop, at least for that evening. So although I know this behaviour was down to her dementia, I also became aware that it's not true that PWDs cannot control what they say at all.
At least, at this stage of moderate Alzheimer's, my mother certainly could when she wanted to.

 

[Spamar]

Before I knew anything about dementia, I always said that old people lost the switch and told things as they were, and their true nature emerged. Yup!